Life Matters Media
Quality of life at the end of life

Agnes’ Story


Accompanying Essay: Hope, by Andrew Thurston, M.D.

There was a period in my life when I was afraid of hope.

It hovered over me at times, this great existential albatross, trailing me as I navigated those early years of medical school. I was young, then – and naïve. And my impression of hope was formed from glimpses through heavily tinted glass: I saw hope as a dangerous thing; a harbinger of rough waters ahead.

A thing that got in the way of medicine.

Of course, I knew what hope looked like outside of the hospital. Hope was positive, it was a sign of good things to come – an indicator of potential and possibility. I hope it doesn’t rain today. I hope I don’t miss my flight. I hope I am a good father.

But in those early years I convinced myself that hope in the hospital was a very different thing. It was a burden worn around the neck – a weight to be carried. People hoped for a cure. People hoped… for a miracle.

But what did I know. I was fresh out of school, my nose still smudged with ink, my fingers cut by the pages of my unforgiving syllabus. I saw hope as a reflection of the impossible: of what all my textbooks said would never happen.

And so, under the unrelenting glare of judgment, I saw Hope fused inseparably with another word – and in my mind False-Hope was this winged hellion that cursed, rather than blessed, whatever journey we were on.

But I see things so very differently, now.

Now that the ink has scrubbed away and the paper cuts healed – now that I have cared for the suffering and dying with my own hands – I see hope in a very different light. And though the glass through which I look is still there, it is made of something thinner, and is no longer tinted and stained.

I see hope, now, as a wonderful thing.

Hope is the reason I practice medicine: it is the reason we live and breathe and walk – sometimes lightly, sometimes with heavy feet – the pavement of our lives. I no longer see hope as something that gets in the way: I’ve come to realize that hope is the way.

And so there can be nothing bad, or wrong, about hope. There is nothing intrinsically dangerous about hoping for a miracle. Hope is the metaphysical reflection of the person before you: it is a reflection of fear and value; a reflection of need; a glimpse into the worry within.

There is never anything false about hope: if anything, the things for which we hope reflect the simplest and most honest truth.

These days, instead of fearing hope, I have come to embrace it. I’ve hoped with families – many times – for a miracle. I’ve hoped for the discovery of new drugs. I’ve hoped for a cure. If I’m asked if I realistically believe these things will happen, I don’t lie – I give my honest opinion. But still, I hope.

Because I have to believe that hope can exist separately from reality. And even though the distinction is easily, and often, blurred – I believe that the two can safely coexist and lend twin anchors in a raging storm.

But hope, as with anything in life, must be used responsibly – there is no wish or want, however small, that lacks the power to affect change. I think the way to get the most out of hope is to hope, and prepare. Let’s hope for a miracle, and prepare for what life may look like if that miracle doesn’t happen. Let’s hope for a new drug to treat your cancer, and prepare for a future in which science has failed.

And let’s prepare for our hopes to change as well. For just as our bodies are changed by disease, so too may there come a time when our hopes are transformed: when our hope is no longer for a miracle or a cure, but for comfort.

And to be at home.

And to be surrounded by the people and the things we love.

And that’s ok. In fact, that’s a wonderful thing.

The only way I can carry on as a palliative care physician is if I continue to hope, and continue to support hope and its evolution with as much respect and reverence as I can afford. I have come to realize, after all these years, that hope is a hovering companion: a guiding presence as we navigate the eddies of disease.

Perhaps, then, the greater injustice is not to support hope whenever and however it appears, but to take aim and shoot it from the sky.

Andrew Thurston is a Palliative Care Fellow at the Feinberg School of Medicine of Northwestern University. He received his undergraduate degree in Biology at Yale University and medical degree at Baylor College of Medicine. He completed his residency in Internal Medicine as well as a Geriatric Fellowship at Northwestern University. He has been writing creatively since high school, and is a participant in the Project on Civic Reflection and a long-time advocate for a partnership between literature and medicine. He will be starting as a Palliative Care attending at the University of Pittsburgh Medical Center in August.